(A note on Emma’s post. Because this is a fictitious dialogue that Emma wrote, for clarity’s sake, I asked her if it was okay to put the Autistic person’s words and thoughts in italics and the non autistic’s words in quotation marks. She agreed. My part of the conversation is in parentheses.)

For today’s blog post, let’s pretend you are the Autistic one and I should be the non autistic.

“Oh dear! Why are you hurting yourself?”

(I asked Emma whether the Autistic person could use spoken language to speak.)

You can’t speak and I will talk for both of us, it will be more authentic that way. Maybe you talk, but not with the words that best describe what’s in your mind.

“I don’t understand, do you want to go outside? Why are you biting yourself? Does that mean you do?”

You are thinking about expectations and how hitting yourself takes away the pain of not being understood and unable to say the words that will help.

“Here! We will go outside. It’s a beautiful day.”

I don’t want to go outside. I want to read a story.

Pointless bottling emotions of endless frustration cause words to wither in the recesses of the mind. Biting becomes the only way to stay rooted, but causes everyone watching to respond in loud voices of angry fear. Until there is understanding, you are alone in the terrible confusion of other people’s voices that are louder than yours.

Caution is needed whenever we decide we know what is in the mind of another human being.

Barking in the terrible terror that comes with being something so feared and hated.
Daring tremendous love for those who fear.
Healing tears for those who are in brutish pain.
Freedom from hurtful words about cures for being a part of the human race.

Help me so I can communicate.
Give me an education so I can learn.
Treat me as you want others to treat you.
Cheer me on.
Remind me of all I am capable of and focus on what hinders you, but don’t hurt me because I do not experience this world as you do.

We can learn from each other, but learning requires an open and willing mind. Too many have given us fear instead of hope.

Which, when, why, who, where – we ask.

We matter.
We are all capable of being kinder, more compassionate, more loving to others and ourselves.

*A word from Ariane – Emma became very upset while writing this and began banging the table with her fists and then bit herself. When I asked if she was able to continue, she typed, “No. No more. No more.” – I asked her if she was okay with me adding this here. She typed, “yes.”

There’s a young man, his name is Reginald. Everyone calls him Neli. He was on the high school wrestling team, wore a key on a chain around his neck, liked to hold three playing cards, loved his hoodie, repeated “television and movie lines ” and carried a “string that he runs through his fingers.” He was described as being shy and he liked going to his local library, which was two miles from his home. But one day none of that mattered. One day someone saw Neli sitting on the grass outside the library waiting for it to open. They called the police, reporting a “suspicious male, wearing a hoodie, possibly in possession of a gun.”

Neli is black.

Neli is also Autistic.

All the schools within a few miles of the library “went on lockdown.” SWAT teams were called in. That’s at least five schools, though one report said it was eight. Five schools. Eight schools. Lock down. SWAT team. All because an anonymous source said they saw someone suspicious sitting outside a library.

Suspicious could mean any number of things. Maybe it means someone who moves differently, keeps their head down, stares at their feet, doesn’t look you in the eye when you speak to them or doesn’t answer you at all when you ask them a question. Maybe they rock back and forth as they stand or sit, maybe it means they run a piece of string through their fingers or maybe they twirl it around and around the way my daughter does.

Neli was found, frisked and was unarmed. This is where the story should have ended. It is at this point that the situation should have been diffused. This is where the person who had the ability to calm things down could have, but chose not to. Maybe a parent, teacher, someone in the community who knew him, who could have vouched for him might have stepped in. Except the school resource officer who approached Neli and frisked him, did know him or at least had seen him at his high school. Whatever he knew or didn’t know wasn’t helpful as Neli’s life was about to get much, much worse. Neli was forced down over the hood of a car and told he was being taken in.

According to one report Neli cried, “I didn’t do anything wrong!” The arresting officer replied, “You don’t have to – Welcome to Stafford County.” Then he held a gun to Neli’s head and said, “I will blow your head off, nigger.” Neli fought back and in doing so the officer was hurt.

The jury deliberated for three days, found Neli guilty of “assaulting a police officer among other charges” and recommended a sentence of ten and a half years.

Ten and a half years.

The judge disagreed and sentenced Reginald Latson to two years in prison with time served. Except Reginald had done nothing wrong. Except that ONE YEAR in prison for seeming “suspicious” to someone is not justice.

“Suspicious” could mean someone who utters lines from a favorite movie or says something that is considered out of context or not relevant to the conversation. Or maybe suspicious means “not white” and when combined with any of these other things this results in people imagining there’s a weapon as well. Or maybe not being white is all it takes. But one thing is certain, being viewed “suspicious” and black and Autistic in today’s world can get you locked up, sentenced by a jury of your peers to ten and a half years, put in solitary confinement for most of your time in prison, and when you’re broken, when you give up the will to live and try to kill yourself, it’s enough reason to put you in a straight jacket, restrain you for hours, hours in a chair, and then slap you with another charge to make sure you never get out of prison.

The Bazelon Center wrote before sentencing last week:

This counterproductive and inhumane cycle continues with charges Latson is scheduled to face this week stemming from an altercation with a prison guard that occurred when he was being moved to a crisis cell while in psychiatric crisis and suicidal. There was no serious injury to anyone in this incident other than Latson, who was shot with a Taser and bound for hours in a restraint chair. Nonetheless, a new felony prosecution was initiated.

As I write this Neli has been sentenced to another six months in prison. This is beyond unacceptable. Neli should never have been charged to begin with. None of this should have happened. But it did.

A massive number of people have been working hard to gain Neli’s release. At this moment it could not be easier to do something that could help. If you only have a moment, sign this petition that my friend Kerima Cevik of the blog Intersected started.

Please. It literally takes less than 60 seconds to add your signature to this petition.

Increasingly I am uneasy about writing on this blog unless Emma is an active participant. In other words, no longer can I sit down and write something the way I once did four or five days a week, even if it is about autism in the most general sense of the word, without Emma giving her views. After all, this is her neurology (and her blog) and not mine. I can write about how our different neurologies intersect, even overlap at times, but without her weighing in, I am left feeling so uncomfortable I just can’t do it.

So…

I just read Emma this paragraph and this is what she typed:

“You can continue, giving an example of how you cope with your obsessive-compulsive urges and ask others to share their experiences with this too.”

“Oh,” I said, a little surprised by where this was headed, “I wasn’t thinking about writing about that.”

But you see, this is the thing… I have another blog, Where Art and Life Meet, and that’s the blog where I can write about whatever I feel like, but this one… this one bearing my daughter’s name… this one is hers, not mine. So every time I write something on Emma’s Hope Book I am a guest and I’m hyper aware of that. I am here only because Emma has given me permission to be.

So this morning Emma has asked me to write about coping with my “obsessive-compulsive urges” and so I will.

When I think about the things I become obsessive-compulsive about it is less about a particular thing and more about anxiety, worry and stress. It is the process that occurs in my brain that reminds me of a scratch on a vinyl record causing the needle to skip, playing the same few notes over and over again until someone comes, lifts the arm with the needle and allows the song to continue. My mind gets caught in the skip and it can get stuck there with just about anything, a word misspoken, a misunderstanding, an idea of something I did, but wished I’d done differently, or something I’d like to do but haven’t, I can get stuck on a conversation, something that was said to me that hurt my feelings, or something I said that I worry might have hurt another or it might be something I want to do, but have not yet accomplished.

The worst times for my obsessive thinking are in the evening hours or late at night. There is always anxiety, often stress, combined with worry and as I spiral, it often feels as though I were falling down through blackness, bouncing from one awful thought to the next, unable to grab onto anything to steady or break my fall. It feels terrifying and there’s an aspect of feeling completely out of control and yet trying desperately to regain control of not just myself, but of all my surroundings.

Over the years I’ve learned some tricks that mitigate how bad things get with varying degrees of success. The first is to remind myself as I’m falling into the blackness that these are just fears and feelings and not facts. I can listen to them, but remind myself that they will wear themselves out eventually and I do not need to believe them. Listening and believing are two separate things. This sounds much easier than it is. Sometimes reminding myself of this helps and I’m able to detach enough that I can calm myself but often it does not.

Sometimes the best I can do is identify the obsessive-compulsive thought, label it, accept that I’m having it and sit tight until it passes. When I was in a particularly dark place many years ago, I would outright lie to myself. I used to tell myself that for the next five minutes I would not give in to the compulsion, but after the timer went off, I could do whatever it was. Then the timer would go off and I’d set it for another five minutes, promising myself again the same thing until the urges passed.

Some other things I’ve done that have been intermittently helpful are talking to others who understand and who are also obsessive-compulsive, meditation, writing, reading, taking a walk, exercise, or learning something new, like studying a new language, some sort of mindless activity like knitting or crocheting.

Obsessive thinking, the kind where your mind feels as though it were spinning out of control, where you go from one stressor to the next like a pin ball, ricocheting from one thought to the next then finally calming yourself down only to have your mind latch on to another dreadful thought, is a private kind of hell that if you’ve never experienced this, you cannot really have any idea what it’s like. It’s a feeling of desperation, horror and self betrayal all rolled up into one. And the self talk usually makes it worse because the self talk can be so brutal and cruel.

Emma has asked that I invite others to share their experience with “obsessive compulsive urgings” and so I am. Please keep in mind sharing your experience with obsessive compulsive thinking and what has or hasn’t worked for you is not the same as advice giving. Advice giving can be annoying, particularly if the person giving the advice takes on an attitude of superiority. This is not the place for that.

Like this:

When I first heard the words “presume competence” I had no idea what that meant. I cobbled together some ideas of what I’d read and thought it meant and did my best to put them into action. I did a great deal of “acting as if” and reminded myself, when my daughter wandered off in the middle of my explaining something to her, to keep talking anyway. When she didn’t seem to look at whatever it was I was showing her I pretended that I knew she was taking it all in. I pretended I believed, even when I didn’t. And when my energy was depleted I would not place demands on either of us. If I wasn’t able to take actions that were centered in presuming competence then I tried not to take any actions at all.

In the beginning the best I could do to show a presumption of competence was to read age appropriate books to her. This was when Emma was eight years old. I still remember the first book I read that wasn’t considered “young” for her age. It was a biography of Balto, the Siberian Husky who raced through a blizzard in whiteout conditions delivering a much needed serum saving countless people sick with diphtheria in Alaska. After Balto, I read a biography of Helen Keller specifically for children and then, because Emma seemed to enjoy it so much, we read the autobiography of Helen Keller, all the Mary Poppins books, followed by The Wizard of Oz, Alice in Wonderland, The Secret Garden, The Tale of Despereaux, Winn Dixie, Bridge to Terabithia, Little Women and on and on we went.

At first I was unsure whether she was even listening, let alone enjoying any of these books. But one night as she settled into bed, and when I didn’t pull out a book, Emma sat up and said very clearly and distinctly, “Helen Keller.” Emma was not typing yet, so I wasn’t completely sure she really wanted me to read Helen Keller or if she was just saying the name because it was what I’d been reading. I distinctly remember questioning whether she really wanted me to read the book because it interested her or because this was just part of an established routine and then I had a moment of guilt for doubting her.

As I said, Emma wasn’t typing yet, so there was little we could point to that backed up our decision to presume competence. There was no “evidence” to suggest what we were doing had anything to do with anything other than a hope and a wish. As presuming competence is not typically done in the general population or at any of the schools she went to, we were definitely doing things differently. There were times when I doubted what we were doing. There were times I didn’t believe. There were times I wondered – what if we’re wrong about all of this. What if what everyone says is true, really is? What if? What if?

In the end I just kept coming back to the thought that presuming competence harmed no one, but to not presume competence and to be wrong would do tremendous damage. As time went on and it became clear just how many mistakes we had made, I became more determined than ever to err on the side of support, encouragement and believing in her rather than the other way around. It is strange that the focus is so often on all that is challenging, rather than encouraging all that is not. Often that thought was the only thought that kept me moving forward. Sometimes one idea, just a single idea is all it takes.

To presume competence became a living amends and a way of life. At the very least it is something I can do that is not going to add another item to that lengthy list of mistakes made.